What to do when you feel fine but the damage is bigger and bigger?

I was diagnosis in 2019 (after double pneumonia) "Bronchiectasis in all five lobes". Obviously, this had been going on long before diagnosis. I've been a very dedicated walker for 40 years. I think whatever mucus I was producing then was coming up on its own through the effort of walking. I chalked the fatigue I was feeling to age, but this fatigue did impact my energy level. In the last two years, I began to develop more infections. Even these infections were manageable - if I had fever, I'd go to the doc and be treated; if no fever, I'd work my way through it - even pleurisy - just kept walking and it would subside. I always look good to the clinician - good sat rate and vitals, so in other words asymptomatic to the doc. But asymptomatic wasn't really true. At home, for some time I began to have increased mucus to deal with. I did airway clearance, took Mucinex, ate well, but was becoming more fatigued and losing weight. I still could walk, but the weather and smoke impeded my efforts. This spring I caught something, was hospitalized with sepsis and productive heavy pneumonia. Discharged, relapsed, hospitalized, etc. With follow up, MAC Intracellular plus a Haemophilus infection were discovered. Big 3 treatment and Brinsupri are slowly helping, and I mean slow as in baby steps. I was told the MAC infection had progressed to the stage where it "bloomed", so my (now immunocompromised) system couldn't fight off the Haemophilus (opportunistic) infection. Should I have been treated while I was asymptomatic? I sure wish I would have pushed for it, but I didn't understand the significance of fatigue and increasing sputum as symptoms. Here it was the insidious MAC, gaining a firmer grip on me for months. Docs say I will never be rid of this, and as sick as I have been, I know considerably more damage has occurred. If anyone out there is wondering whether or not to treat, remember, MAC grows slowly at first, but then it can bloom, kind of like cancer does.

I have a similar story. My doctor at NJH said “treat, now”. I have a lot of damage on CT. It was his opinion that even though I felt fine, I would not continue to feel fine as the damage progressed and once the damage is done, it’s done. They want to slow that process as much as possible, hopefully retaining as much lung function as possible. We hear a lot about the importance of symptoms with regard to initiation of treatment, but the degree of damage on CT seems likewise significant. So even though I felt fine, the recommendation was to treat given the extent of damage on CT and the fact that it was actively progressing. I am surprised you are not being counseled to treat with progressing cavitary disease, regardless of symptoms. Is your treating doctor a true NTM expert? I would suggest getting another opinion as soon as possible.

I was diagnosis in 2019 (after double pneumonia) "Bronchiectasis in all five lobes". Obviously, this had been going on long before diagnosis. I've been a very dedicated walker for 40 years. I think whatever mucus I was producing then was coming up on its own through the effort of walking. I chalked the fatigue I was feeling to age, but this fatigue did impact my energy level. In the last two years, I began to develop more infections. Even these infections were manageable - if I had fever, I'd go to the doc and be treated; if no fever, I'd work my way through it - even pleurisy - just kept walking and it would subside. I always look good to the clinician - good sat rate and vitals, so in other words asymptomatic to the doc. But asymptomatic wasn't really true. At home, for some time I began to have increased mucus to deal with. I did airway clearance, took Mucinex, ate well, but was becoming more fatigued and losing weight. I still could walk, but the weather and smoke impeded my efforts. This spring I caught something, was hospitalized with sepsis and productive heavy pneumonia. Discharged, relapsed, hospitalized, etc. With follow up, MAC Intracellular plus a Haemophilus infection were discovered. Big 3 treatment and Brinsupri are slowly helping, and I mean slow as in baby steps. I was told the MAC infection had progressed to the stage where it "bloomed", so my (now immunocompromised) system couldn't fight off the Haemophilus (opportunistic) infection. Should I have been treated while I was asymptomatic? I sure wish I would have pushed for it, but I didn't understand the significance of fatigue and increasing sputum as symptoms. Here it was the insidious MAC, gaining a firmer grip on me for months. Docs say I will never be rid of this, and as sick as I have been, I know considerably more damage has occurred. If anyone out there is wondering whether or not to treat, remember, MAC grows slowly at first, but then it can bloom, kind of like cancer does.

@ursala7
I want to affirm what the writers above have said. I had very few symptoms for years, and I still look healthy, though, like both of you, the MAC spread, etc. It does seem as if suddenly you're sick, but as you both clearly explain, it was there all along getting worse. It was never stressed to me by more first Infectious Disease doctor to do airway clearance. It was never mentioned. He couldn't figure out how I was so healthy, no symptoms, no coughing. Now I have lots of cavitary stuff, treeing out, etc. I'm winded walking, lots of mucus, more coughing. The 5 antibiotics I've been on for two years aren't giving me a negative sputum sample, including the year-long stint on amikacin and clofazimine, a usually very effective drug that research or university hospitals can prescribe. I hope others take to heart what you wrote!
Best regards,
Mokie

My advice after dealing with bronchiectasis for a long time, become of a student of the disease. Learn as much as you can. Power through the information. Figure out what works for you in your life. There are no shortcuts. It's a manageable process. Start here.
https://connect.mayoclinic.org/discussion/resources-for-the-abcs-on-bronchiectasis-and-mac-ntm/

Attached is link to video of presentation by Dr. Shannon Kasperbauer, Inf Disease, NJH on “Watchful Waiting” (Bronchiectasis and NTM Assoc “Coffee Break Educ Series” 7/1/26)